Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Just Joined, Fiance Diagnosed With Celiac


tannilisa

Recommended Posts

tannilisa Rookie

Hi, I just now found this message board after doing a search and I'm glad I found this :) My fiance, soon to be husband next month, was diagnosed with celiac yesterday, I went with him to his new GI doctor after a blood test came out postive for celiac. His mother was also diagnosed last year and has severe osteoporosis, she is 63 yrs. old, so she was diagnosed later in life. I suspected he had the same thing after bouts of diarrhea and he would get stomach bloating, gas, and pains, so he finally told his doctor about his mother having it, and that's when they ran the test. His doctor is exellent, and he himself has celiac, we were in the office for an hour, his wife is also a doctor and works with him, she teaches how to cook for celiacs and told us where to go for gluten free food, they went through everything with us and gave us a information packet with allowed foods, and not allowed foods. It's all a bit overwhelming and confusing and I have no idea where to start, it's certainly going to be a challenge starting this gluten free diet :blink: The good thing is that he doesn't really like pasta, breads, sweets or pastries anyway so that will be easy, the hard part will be all the hidden gluten in foods and cross contamination in resteraunts, he's now afraid to eat out. I wanted to get more info. about how to cope while eating out, and also what spices are safe and which ones are not? Thanks for any info :)

Tanya


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



debmidge Rising Star

Tanya, You've come to the right place. Everyone who is on this board gives of their experience and knowledge freely.

My husband was just diagnosed almost a year ago and it's a whole new world. He had raging symptoms for years and doctors mis diagnosed as IBS for 27 years. He has yet to eat in a restaurant yet because he still can't get his symptoms fully gone. Your fiance might be different. I suggest your review the posts under Restaurants.

Most of the info you need will come from the manufacturers themselves. I've been calling them all year to verify if something is gluten free or not. The vague answer is "This product is made in a plant that also handles gluten products, so we can't guarantee that this particular product isn't cross contaminated."

The Celiac Sprue Assoc. (www.csaceliacs.org) puts out an annual manual that provides info on mainstream foods and if they are gluten free. It costs about $30 and you can download an order form at their site. It's in a binder book.

There are other gluten free lists and you will notice that other members of this board have posted their websites in other sections of this entire board site. Take a hour or so to review the posts in the Ingredients board and Coping board. It's worth the time.

Best wishes.

D.

Guest Lindam

Hi Tanya,

Welcome to the most wonderful site! I was diagnosed in March '04 and my head was spinning. I didn't know where to start. The best place is this forum. Everyone hear speaks from experience and have so much knowledge. Within this forum there is also the food lists that are mainstream. If you go the main page, site index, the third or fourth listing is the foods that we can eat. That was great big help to me. I have not yet gone out to eat yet. I am still very scared that I will get sick. But if you want, here is the link to go to a website that you can download restaurant cards. I printed them out a bright colored paper and then laminated them. If you go to Open Original Shared Link and on the left side of the screen there is an icon for restaurant cards. I hope this helps. This way I can give it to the wait person and the chef can see it without ruining it.

I printed a bunch of these out and gave some to my GI doctor who was so grateful.

May I also add that the best support that I get is from my family and friends. This is a learning experience to me as well as them.

I wish you all the best.

Good luck!

Linda

lovegrov Collaborator

If you decide to get that CSA book I'd wait a month or two. I think the one out now is almost a year old.

You might also check out this place:

Open Original Shared Link

This is another forum you can join. Or you can pick up info (but not post) as a guest. If you scroll down the start page you'll find Celiac & Forum FAQs. Go there and scroll down and you'll find all kinds of helpful documents, including places to look for hidden gluten and contamination and a list of the companies that clearly list gluten in ingredients. All you have to do is read the label.

You'll also find a gluten free product list maintained by members of the forum. Some of the listings are old but many are fairly recent.

If your fiance was just diagnosed he really shouldn't go out to eat for a while. Eating out is VERY risky, even at the best places. He needs to heal and get used to how to handle the diet first. Eat fresh meat, vegetables and fruit for a while.

The social part of celiac is always a challenge (though certainly not impossible) but shopping and eating at home becomes a breeze.

richard

tannilisa Rookie

Thanks a bunch for your replies :D last night was his first gluten free night, which he didn't mind at all, he loves rice and meat and salads with oil and vinagar, we probably won't be out to eat for awhile until he gets used to the diet at home, his mom is still having a time with the diet, but is getting better at it, she has a bunch of cookbooks that she's gonna let us borrow. I also was tested last month for celiac, because of severe digestive problems, they thought I had crohn's, but the colonoscopy came out negative. I haven't heard anything yet, so I'm assuming the test came out ok (I hope!). Thanks again for your info, it's a big help and much appriciated :)

-Tanya

jendenise Rookie

You mentioned that you are getting married next month. Have you thought about a little gluten free bride & groom cake so that you two can still do the slicing of the cake and all that good wedding stuff? If you can't find a baker who can help you, you may want to start experimenting and try to make your own. Maybe the cake decorator can still decorate it if you explain the situation, just let them know that cross contamination is an issue. Also, let your fiancee know that malted drinks (beer for example) are no no's too. If you find that your wedding menu doesn't offer anything for your fiancee to eat you might want to go online to amys.com or glutensolutions.com, or glutenfreemall.com and maybe order something that's microwaveable or easy to prepare for him. Good luck, I hope you have a beautiful wedding.

tannilisa Rookie

Yup, we're getting married next month on the 9th :D luckily, my fiance's mother is a professional cake maker/decorator, so she'll be doing ours, and she has all the ingredients for a really tasty gluten free cake :P we really lucked out! Thanks for the wedding wishes! :)

-Tanya


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jendenise Rookie

Wow, that's great! My fiancee and I have been putting off getting married because we're opening a new business and we just moved, and all the fun stuff that goes with it. But maybe you could give me some info about your mother in law and where she's at (I'm in Las Vegas) and when we finally decide to get married maybe I could contact her???It would be great to be able to fully trust someone else regarding food preparation for our wedding.

  • 1 month later...
wifeofceliac Newbie

I noticed in your posting that you mentioned that your fiance likes his salads with oil and vinegar. My husband is a celiac, and I was told that the only vinegar that he can have is apple cider vinegar. Is this true? When you're not allowed to have viniegar it limits alot of items. Maybe I was mislead, we've been doing without vinegar for about 2 years now. Some advise please. Or do you make your dressing with apple cider vinegar?

Thanks,

Dana

crc0622 Apprentice

Tanya - how did they test you for celiac? You mentioned a colonoscopy for crohn's but you'll need very specific blood tests and/or an endoscopy for celiac.

Dana - he can have any distilled vinegar. The only big no-no is any malt vinegar, as it is made from barley.

Hope this helps!

Celeste

Guest DaiseeLove
Hi, I just now found this message board after doing a search and I'm glad I found this :) My fiance, soon to be husband next month, was diagnosed with celiac yesterday, I went with him to his new GI doctor after a blood test came out postive for celiac. His mother was also diagnosed last year and has severe osteoporosis, she is 63 yrs. old, so she was diagnosed later in life. I suspected he had the same thing after bouts of diarrhea and he would get stomach bloating, gas, and pains, so he finally told his doctor about his mother having it, and that's when they ran the test. His doctor is exellent, and he himself has celiac, we were in the office for an hour, his wife is also a doctor and works with him, she teaches how to cook for celiacs and told us where to go for gluten free food, they went through everything with us and gave us a information packet with allowed foods, and not allowed foods. It's all a bit overwhelming and confusing and I have no idea where to start, it's certainly going to be a challenge starting this gluten free diet :blink: The good thing is that he doesn't really like pasta, breads, sweets or pastries anyway so that will be easy, the hard part will be all the hidden gluten in foods and cross contamination in resteraunts, he's now afraid to eat out. I wanted to get more info. about how to cope while eating out, and also what spices are safe and which ones are not? Thanks for any info :)

Tanya

Hi, welcome to the forum; I'm new here too. I hope your fiance is doing well. I was recently diagnosed and it HAS been difficult.I, too, am engaged: much luck to you both!! :-)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...